Follow the journey of our sweet little micro-preemie Thurston........
When he shall die
Take him and cut him out in little stars
And he will make the face of heav'n so fine
That all the world will be in love with night
And pay no worship to the garish sun.
~William Shakespeare, Romeo and Juliet

About Me

I am a stay at home mom and aspiring vintage seamstress interested in preserving and bringing back vintage fashion through the use of antique patterns. My years of interest include the Edwardian era through the mid 1930's.

Don't ask (it's forbidden to know) what final fate the gods havegiven to me and you, Leuconoe, and don't consult Babylonianhoroscopes. How much better it is to accept whatever shall be,whether Jupiter has given many more winters or whether this is thelast one, which now breaks the force of the Tuscan sea against thefacing cliffs. Be wise, strain the wine, and trim distant hope withinshort limits. While we're talking, grudging time will alreadyhave fled: seize the day, trusting as little as possible in tomorrow.

Horace

Before I update you on Thurstons progress I wanted to tell you about a beautiful woman I met a few days ago. Her sweet daughter entered the world a mere week ago, born a preemie at 33 weeks, but also born with a chromosomal condition, a condition that most born with die from, sometimes immediate, some in a few months and even fewer will live past a year. My heart bled for this woman. The strength she must have, to know that her daughter will only be here for a very short time, how much no one knows, and to have to at the same time ride the uncertainties of the nicu roller coaster, the tediousness of it all, my heart just gave out. This family truly understands that every single day counts, that every day they have with their daughter is precious and not one to sit and complain about, that her time is so limited that every single ounce of every second cannot be wasted. They are truly my heroes.

I was able to talk quite a bit with her and her family and wax philosophy with them about the brevity of life, how our situations have changed us and I told them that it was quite a while ago that I just stopped thinking the inevitable question that ALL parents of premature babies ask. "when will my baby come home". I remember early on, I thought for sure Thurston was going to be one of those lucky ones that was able to come home around their due dates, give or take a few weeks. He seemed to have been beyond the horrible ups and downs those first couple of months of the nicu life bring and so I set up his nursery in anticipation of his homecoming. I organized all of his little newborn clothes, I hung vintage plaques of Bambi and Thumber and Flower above his changing table for him to gaze at while I was changing him, I put the glider in a little nook, dreaming about holding him late at night while Viola and daddy slept in the next room. I remember feeling so relieved that he was past all of the hard stuff and could now just move on to cpap, to nasal cannula, then ultimately to room air, just like most of those other little babes did in our NICU. Closing in on his due date, I started to realize that he would be there a little longer, especially as babies that were born 1 and 2 months after him were already at room air and he was stuck on the cpap. I began to get frustrated at the prospect of a couple more months and that is when my mom came back in July to help us out as we just didn't realize he was going to be still in the nicu so much past his due date. Then as he started to show signs of coming home, drinking his bottles of milk, breastfeeding, I was thrilled and so excited that soon, maybe my boy would be able to be home by the time he was 2 months old adjusted....then August hit us, Cold and swift, and I remember thinking to myself that week, please please if he makes it out of this, if he lives through this, I will never ever ever complain again about life in the nicu, I will just be so happy to have my son be alive and well. Well he made it out and I have not even once thought about it ever since. I truly have been changed. I don't even for a second think about when he might come home. I don't even care really. I know we will still be here for halloween and if Thanksgivng and Christmas roll by then so be it. At least now Viola can visit him so we will be able to spend those holidays together as a family, that is what is most important to me.

Anyway, I was telling this brave family that I have learned what Horace meant when long ago he inadvertently coined the phrase "Carpe Diem". Truly truly I enjoy every second of every day with my son. I don't care if he is in the nicu, I just care that I have the ability to go and be with him, to hug and cuddle him, to sing and talk to him, to kiss his sweet face all over. We are truly blessed that he is here with us. I cant truly remember the last time I actually thought that question,"when will he come home?" The only important thing is that he is still here and every single second I get to spend with him, wether it is in a nicu, at home, at the north pole, I really don't give a flying monkeys uncle where, as long as I get to spend it with him.

So Monday night we checked into the Ronald Mcdonald house. It is a few minutes walk from Dell so we felt it would be good to stay there for a few days so we could be close to Thurston. This place just makes it so easy for families in their time of need. I was very nervous so Chad and I decided that I would be with him the night before and Chad would get up early to be with him while he was being wheeled down for surgery. I probably would not have handled that part very well. It worked out great. The scariest part of the surgery for me anyway, was the anesthesia, and going back on the vent. I was nervous with Thurstons chronic lung disease that it would be difficult to get him off of the vent. Well, right after the surgery, we waited in a little room and the surgeon came in and told us it was successful and he did very well. He answered all of our questions and so we went up to Thurstons room where he was waiting for us. He actually was already awake and struggling with the vent and kept fighting it. He had a very scared and pissed off look in his eye, like"what the hell mom, why am I on this again!!!". So the neonatologist came in and I asked if there was anything we could do for him, he was just so uncomfortable, and with his wonderful british accent he said,"well lets just try extubating him and see how he does". WHAT....I was both excited and nervous. They were fully expecting Thurston to be on the vent for at least a few days, but this doctor is crazier than Doctor Maverick back at North Austin. It was only a few hours after his surgery so I really thought this guy was nuts!!!! He said, "well we wont know unless we try and he is not tolerating being on the vent so lets just see how it goes, if we have to reintubate him then we will but we wont know until we try"...Uh ok Ill be going downstairs for a cup of coffee, I just cant stay to watch.......So I go eat and come back and VOILA...my kiddo is back on nasal cannula at the same settings he was on before at 6 liters at around 80 percent oxygen. WOW.........

Anyway, he was ok that first day but during the night he was in a lot of pain and I kept trying to tell the nurse to do something but she kept dragging her feet. She was a very nice nurse but I just couldnt get Thurston to calm down, he wasnt getting any rest and he was practically crying and moaning the whole night. Finally at around 6 in the morning she called the doctor on call and they gave him a phyntinal drip and low and behold, THurston was soooooooooo much more relaxed and comfortable. I just hate pulling teeth with nurses, I mean I so respect them and they do such a great job, but occasionally they just dont listen to parents. I KNOW MY KID HE WAS IN PAIN!!!!!!! The doctor in the morning apologized and said that she should have given him the drip much sooner and that always makes a parent feel a little better that we are NOT THAT ÇRAZY. We truly just want what is best for our kid and truly, we know our kids well. Anyway, they started his feeds back up, THROUGH his g-tube and he will probably be back on full feeds tomorrow. We are very excited for him as he now has a fundoplication that will protect his lungs from reflux and microaspiration(and hopefully help protect him from an incident like the one in August) and he now no longer has to have that tube shoved down his nose poor little guy, that was irritating his throat and making him very uncomfortable. Only time will tell to see if this helps to reduce his oxygen needs at least to a point that he can be on a lower flow, and ultimately, so that we can avoid giving him a tracheostomy. We just have to be patient for our little patient.

So for now, we just have no idea about Thurston's future. All we know is that he is here with us now, he is as cute as a bug in rug, and that we are very lucky that everything so far has been working out at his new NICU and that he is on the path of healing, protecting, and getting the help he needs. Truly this whole experience has taught me that none of us know what our future holds, none of us knows how long we will be here. So when your kids wake you up at 3 in the morning, just know no matter how tired you are, rather than looking at it as an inconvenience just think about it as an extra hour or so that you GET to spend with your child, what a privilege it is to have that little being in your life. I know, especially being separated this long from my sweet beautiful son, that life truly is all about carpe diem!

Glad to hear his surgery went well. This post is beautifully written and eye-opening. I will stay up until 2 AM happily with my babies tonight, and I'll have to tell Jim to wake up enthusiastically the rest of the night feeds. Thurston is such a strong little fighter. I am hoping along with you that the g-tube will lower his O2 needs. Sending love and well wishes- Michelle

Another exquisitely written post from my sweet daughter re our sweet little man's journey...I miss you all so much... I, too, have learned from your experience...I will cherish every moment of every day with my loved ones...can't wait to see you all again. I love you. Mom/Ama xxoo

You need to turn your blog posts into a book... :) Thank you for the update on how you guys are doing. You are always on my heart and in my prayers. Natalie and I drove by Dell last Tuesday and all of me wanted to run in there to see you... You are such an amazing family, I'm thankful to know you.

I agree wholeheartedly with Jenn about a book! So wonderful to hear the confidence in your voice. You are so strong, woman! It's seems you are reaching a good place in your heart, and I know Thurston feels it too! Enjoy every day with him. And thank you for reminding us all to do the same with our little ones.

Undoubtedly your motivating inspiring words would sell if put in print. As we put our kids down for a nap this afternoon, I reminded them of how lucky we are to have the moment together and for them to have their cozy place to nap. They understood the message surprisingly well and are quietly trying to rest now. Love, Donna

Hi Donna - my son is a former micro who spent about 8 months in the NICU. He has/had severe BPD but he also had a kidney stone in the NICU. One night he just couldn't get comfortable - then he started screaming and was inconsolable. An ARNP randomly thought to check his kidneys and sure enough, he'd passed a stone that blocked his ureter. Anyway, I'm only telling you this not to worry you but as something to ask Thurston's doctor. With my son, his respiratory status simply did not get better until the stone was out.